3 miles of walking is very impressive. He must be feeling good. Good news on your daughters visit also, im sure she will also be thrilled to see her daddy. On the matching part, i don't profess to know much on it but i know my brother was a perfect 10 out of 10 match for me on the 5 sets of antigens they test for. I thought that was the better match? My doctor told me i couldnt have had a better match than my brrother was. Is the 8/8 match more stringent than an 10/10 or is it intended for unrelated donors? Hopefully one of his siblings will be a match. Praying for his remission and your family. Sounds like things are going well.

Dave J.

Great on the walking !!! keeping up even a little of your strength is great :)

My mum was lucky I guess as they found 3 matchs at 10/10 and then tested further and found a 12/12 match from one of those three..... honestly not sure what the extra 2 was but they liked that there was another 2 matched.

Good luck :) keep up the great work

xx

Lea,

So happy you get to see Izzy. Walking kept me sane throughout. Once, I ventured too far from the hospital in my yellow (chem gear) smock, gloves and Hannibal Lecter mask ( about six miles too far) and a policeman stopped me and asked me to go back. Hilarious

Praying for a match

Julie

So we found out today that none of Tonys siblings are perfect matches, only half matches, but they did find over 50 (10/10) matches in the registry, I about hit the floor! We cannot believe there would be so many, and are looking forward to the doctors visit during rounds this week to discuss. We have about a million questions, which maybe even some of you can answer.
Dave, We heard there's an easier recovery and less gvhd if it's a sibling match, but trying not to focus on any negatives bc having this many is a sheer blessing
But one step at a time, I want to focus and pray for his complete remission. The Second "chemo bomb" on Wednesday, praying it does it's job!
We walked 2 miles today a little slower, but he feels good otherwise.
Julie, are u saying you litterally walked 6 miles away from the hospital wearing your gear? How did they even let you outside? I'm laughing picturing this!
Aussie, that's great for your mum, I hope they can do that with tony too!

Lea,

What great news on all the donors. There was a patient where I'm treated who had 11 siblings tested, I live in Utah where Mormons have huge failures. Not one was a match. The doc said that was not that unusual. According to the doc only 30% have a sibling match. anothert patient had a ten ten match with her brother who had downs syndrome. She opted to use an unrelated German donor rather than traumatize her brother. She later flew her family to Germany to meet her donor and his family. She is five years post bmt.

As far as the walking yes, I was six miles from the hospital. If your anc was above .5 thou can walk outside. My hospital sits up in the gorgeous avenues right next to the slc capital building. I honestly did not know I could not leave the grounds. This occurred during one of my consolidation treatment s. When the pa met me in the room he told me he wished every patient would break this rule.

Praying for remission for Tony

Families not failures

That is great news on the matches, i was very lucky to have my brother match. I cant believe they let you out of the boundaries of the hospital Julie, Mine would have fliipped if i left the building. It's funny that your hiospital was right down the street from your capital building, so was mine.

Prayers for a complete remission for Tony. If I can get through it (not just me, my whole huge group of people who supported me deserve all the credit), i know you guys can. Stay active and keep the faith, the lord and savior Jesus Christ will deliver.

Dave J.

So happy to hear about all the matches!!! I know that is a big relief. Vince's 2 brothers were checked also but like Tony's brothers they were not a match. They did find lots of matches in the national registry. Our bone marrow coordinator (we had one before they decided he was going to go the chemo only route) said it was a great advantage to have lots of matches because they are able to narrow it down and find the best possible match, Praying for a quick and easy remission!

:) Julie

Amen Dave!!!!

I was supposed to walk the two block area around the hospital-I found out later. I put my shuffle on and listened to my favorite Christian Reggae group-Christafari and I was propelled in a cocoon of God's peace. Next thing I know, I'm being waved down by the po po. One of my favorite AML moments.

Lea,

Tony's unrelated matches is so inspiring! I am getting involved with a drive at the Air Force base (Hill AFB) where I work. We have 24,000 employees here. SO many do not donate because they are misinformed about the procedure to be tested (no blood draw needed (cheek swap) and no hole punching the pelvis (blood drawn from the neck).. Although, so far I have not needed a BMT, I feel so driven to get the word out. So many people in my church of 2000 and my local area want to help and getting on the registry is the best way.

I have a close friend who caught aggressive colon cancer while be tested for donation. He is 10 years cancer free.

I agree Julie, I actually received my be-the-match donation kit today, swabbed my cheeks, and am mailing the kit back first thing in the morning. I posted it on Facebook and have a bunch of friends doing it and spreading the word. I started donating blood but can't donate platelets due to hla positive antigen from my pregnancy, I gotbtrsted to see if I could.
Tony is already talking about hosting a drive through his company as well. Such a simple and selfless act can save someone's life someone like my husband!
Tonight was the first night I came home and spent the night in our house with Izzy (without Tony). I doesn't feel right, doesn't seem fair that I got to sit here with her and enjoy her giggle and her sweet little face while he's in the hospital hooked up to an IV. No person should go thru this once, let alone twice.
I brought her to the hospital today which is over an hour away each direction from our house and so our visit was short. it's very difficult to have a two-year-old confined to a hospital room or a small conference room. He's still not fully nutropenic so they'll allow her to see him for now, and she's completely healthy not around any other children never been to daycare pretty much confined to our house being taken care of by both grandmothers, which is what we need to do to keep her germ free and keep daddy safe
Tony was very emotional and just broke down crying when he saw her, while she litterally did the wiggle dance with excitement when she saw him. I'm hoping this will give him back the spark Abd the fight he needs for this battle
I love spending time w izzy but I can't wait to get back to the hospital- I can't bear the thought if him being alone . I truly wish I could be two places at once:(

I'm sure you and Lzzy give him the strength and will to fight as hard as he can. Prayers are with you and your family to be home and complete again as soon as possible.

Debbie

I wanted to do the donor testing also but since I am 50, my area donation agency told me it would be very unlikely that I would ever be picked to be a donor. I guess I will have to stick to giving blood. Of course, if my sister needed it and I was a match, they would use me then but just to be on the registry wouldn't be of much help.

Is this correct? Has anyone on here had a donor over the age of say 44 that was an unrelated donor?

Lea,

Crying is healthy. Lord knows I have done my share. I cannot imagine what it is like to see a young child, who understands none of this, in one's hospital room. I cried when my adult children dropped me off at the hospital, and when my wife and sister visited me. I found that the situation of having a potentially devastating disease really affects emotional control. I am just now becoming less of a cry-baby.

I too will be involved with be-the-match. I have had so many things going on with my family, that I haven't called the person that Phil Meeks contacted. Phil, a member of Team Transplant 2013, who is doing splendidly, has devoted more hours than there are in a day to getting others to donate. My siblings would donate their marrows at the drop of a hat, because of me. It takes almost rubbing someone's face in this disease to have them realize their duty to help others.

Since it will be virtually impossible to explain to Izzy what is going on with Tony, just keep reassuring her that he is getting medicines to make him well and then he will come home again. You and Tony are so strong to brave these waters again, but I have to reiterate that, although Tony will need a transplant as a security blanket, he still is in an enviable position, if such a statement can be made, when it comes to AML genetics.

BTW, when I look at your beautiful family picture with each of your posts, I smile, because I am just positive that things will ultimately go well for ALL of you.

CLiff

Don't feel guilty about tony being alone, I know i was happy knowing that my wife was at home and the boys were well taken care of, instead of in my hospital room where there was really nothing she could do anyway. Karmanos in Detroit is a about 1.5 hours from home, so it was just to hard to have them visit a whole lot. Plus with the horrible winter we had, i didnt get much in the way of visitors, but i really didnt mind.

Dave J.